Recently a close family member has been diagnosed with ME. It's an awful illness that is stealing her youth.
She doesn't speak about it because of the stigma and lack of any available treatment or research into possible treatment.
She has resigned herself to having to live with this condition, probably for ever. She went from being active, fit and doing a job she loved to being unable to read, drive, hold a conversation without losing the thread of what she was saying. This happened, quite literally, overnight.
When she was first diagnosed she learned that many people with this condition find themselves so ill they are unable to get out of bed for years. She is lucky in that she is not as ill as many people are. But she doesn't know if she will ever again be able to hold down any full-time job, let alone one that allows her to use the skills she has worked hard to develop.
It's an invisible illness.
No-one sees her when she is feeling really unwell. She stays in her room, with the lights dimmed, and the heating on, whatever the weather, wearing the big jacket she no longer needs for mountaineering. She has all the kit for this illness, hats, gloves, down jackets and sleeping bags - she never thought they would be used for this.
Most people have no idea how ill she is, she only sees them when she is well enough to power through on adrenaline.
She doesn't look ill. People are constantly telling her how glad they are she is better when she is well enough to socialise. She has stopped telling them she isn't because they can see for themselves that she looks fine and so they assume she is either lazy or a hypochondriac.
But the energy used on not looking ill costs her days as she recovers enough energy to function again. She often finds herself without the energy to stand up for long enough to have a shower.
So AIBU to wonder how many others suffer from this condition and to be outraged that we are not researching like crazy to find the biomedical causes of this illness that is stealing the lives of so many?
AIBU?
To wonder how many people have CFS/ME?
millionsmissing · 30/10/2017 16:15
Me!
Although I’m mostly recovered now, was diagnosed at age 13 after a nasty ear infection brought it on. Going through school wasn’t great as nobody knew what it was and couldn’t understand why I was off for so long at a time (bed bound), or couldn’t take part in pe lessons or other things and some people made jokes about me ‘skiving school’ or it being contagious 
M.E here too. 25 years, approximately. Thankfully 'only' moderately affected, but still unwelcome and limiting. Also suffer with anxiety and any stress can cause exhaustion requiring total rest.
Even after all these years I still 'push' myself if I feel even a tiny bit better; stupid, yes, but it's so hard to not use available energy!
to all those affected, (and a few spoons).
DD(16) has had it since she was 14. As a parent of someone with CFS/ME, I find the constant fact checking and controversy over everything I research in connection with the illness utterly exhausting.
It's a highly emotive subject. It's very easy for a single aspect of what you're saying to be picked up on and scrutinised by people who have been marginalised through their illness and, rightly so, automatically leap to defend themselves.
But I agree that positivity is so important. Not because it makes you better. But because you are living with a bloody shit illness and anything you can do to make your life that bit more bearable should make a difference to it. Because as a PP said, once the hope goes, you're not left with much. But as another PP said, positivity can sometimes lead to unrealistic expectations which then itself has a negative effect.
So this is where I believe CBT has its place with CFS/ME, which somewhere along the way has been confused with it being a viable treatment option for recovery. But balancing all these issues, physical demands and feelings of despair is very hard and yet it is so important in trying to maintain an element of quality of life, where possible, without jeopardising your health or recovery.
to everyone on this thread living with this illness. My heart goes out to you all.
Morning All 
Thank you for sharing and bed waving 
. It makes me feel less isolated in this miserable illness that has stolen the life I had.
On an adrenaline surge here, fighting a PIP appeal & gathering evidence, hence being awake and being able to post. You'll know what I mean when I say I'm already nervous about the massive crash which I know will follow, so am 'socialising' now.
Aaw thanks furlinedsheepskinjacket
Are you sitting in bed wearing that? 
Sorry, back to it. My anger and frustration at two incorrect PIP awards are bowling me along 
Have a good day!
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